Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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HI David- I was diagnosed in 2011 with smouldering multiple myeloma (SMM) and watched closely since then. I became very fatigued, the really only symptom I had in 2019.
In July of 2019 I had a bone marrow biopsy and that diagnosed over 60% of my bone marrow was MM plasma cells. Meaning my SMM had progressed to full-blown Multiple Myeloma.
I started chemo every week for 20 weeks, then in Jan 2020 I had a mega dose of chemo and had stem cell aspiration (BMB) and in March of 2020 I had an autologous stem cell transplant.
Not sure of the stage I had when I was first diagnosed with MM.
I started Revlimid one month ago. Feeling very fatigued with some digestion issues. I handled the chemo very well and also the transplant well, very few side effects.
I am 68 years old, and in good health otherwise except I am diabetic. I am worried about the future and get very frustrated with the fatigue because I like to be bust in my shop building things or doing repairs to my motorhome or truck and home. I also build wooden boats.
The issue is I do have some PTSD and depression issues from past police and fire fighter work. I do not know if any of this helps but sometime it is good to put it down and see it myself. Thanks for any direction you can supply. or advise. Mark
1) “I was diagnosed in 2011 with smouldering multiple myeloma (SMM) and watched closely since then. I became very fatigued, the really only symptom I had in 2019.In July of 2019 I had a bone marrow biopsy and that diagnosed over 60% of my bone marrow was MM plasma cells. Meaning my SMM had progressed to full-blown MM.”
Several things. If your pre-MM (smm) developed into full-blown MM, I believe your symptom of fatigue was a result from the most common symptom of newly diagnosed MM patients, anemia. In effect, your mm plasma cells were crowding out your red blood cells (hemoglobin).
Fewer red blood cells results in less oxygen in your blood. Less oxygen in your blood results in fatigue. I will link a study that cites this symptom of MM below. Keep in mind that anemia as a MM symptom is different than anemia as a side effect of chemotherapy.
2) “I started Revlimid one month ago. Feeling very fatigued with some digestion issues. I handled the chemo very well and also the transplant well, very few side effects.”
Mark, you’ve had induction chemotherapy, a “mega-dose” of chemotherapy, an ASCT and then you began what is referred to as “low-dose maintenance Revlimid.”
On top of that, my guess is that you were early stage multiple myeloma. This is likely as you were pre-MM or SMM from 2011 to 2019. Being watched closely as you were, it is unlikely that you progressed from pre-MM to more than stage 1 MM or early stage.
In my humble opinion Mark, you did not need all that chemotherapy to put you into remission.
3) “…I am worried about the future and get very frustrated with the fatigue because I like to be bust in my shop building things or doing repairs to my motorhome or truck and home. I also build wooden boats.
The issue is I do have some PTSD and depression issues from past police and fire fighter work.”
A symptom of PTSD is worrying about the future. In addition to the challenges you experienced as a policeman and fire fighter, you have undergone an ASCT. This has also been documented as a cause of PTSD. I will link studies below.
The solution, in my experience, is to either stop chemotherapy altogether or, at the very least, reduce your dose of Revlimid. Say from 10 mg to 5 mg.
I will link studies below that cite curcumin and omega-3 fatty acids as integrating with Revlimid an enhancing its efficacy.
I will also link a blog post that I wrote listing those mind-body therapies that I do to help me manage my PTSD. Maybe these therapies can help you with yours.
“You are tired. Not the kind of tired that is fixed with a nap. Tired morning, noon and night. The question is, why? If you have been diagnosed with multiple myeloma (MM), you know that this complicated blood cancer can cause anemia. According to research, about two-thirds of MMers are anemic when they are first diagnosed. Before we get to therapies that may restore red blood cells, let me define anemia.
Is caused by a low red blood cell count or reduced hemoglobin in the body. Red blood cells carry oxygen so fewer red blood cells mean less oxygen in your blood. Less oxygen and you feel tired or maybe even dizzy. In layman’s terms, the multiple myeloma cells in your blood grow and crowd out your red blood cells.
Therefore, many multiple myeloma patients experience exhaustion even before they are diagnosed.
How can you treat your anemia? Like all therapies there are conventional (EPO or a blood transfusion) or non-conventional therapies such as nutrition and supplementation.
““However, chemotherapy only has a limited success with severe side effects, especially causing damage to normal tissues such as bone marrow, gastrointestine, heart, liver, renal, neuron, and auditory tissues, etc.”
When I first read about curcumin, I learned about an evidence-based multiple myeloma therapy that was also non-toxic. I was ecstatic. Numerous studies, in vitro, in vivo, in humans, have shown that curcumin, a non-toxic therapy, not only kills MM but also synergizes to enhance the MM killing ability of both velcade and revlimid…”
““Approximately one fifth of patients undergoing HCT experienced clinically significant PTSD symptoms at six months post-transplant autologous stem cell transplant”
Post Traumatic Stress Disorder (PTSD) as a long-term side effect from autologous stem cell transplant (ASCT) prescribed to treat my multiple myeloma is insult to injury in my opinion…”
“I have come to believe that my mental health is just as important as my physical health in managing my multiple myeloma. The links below show the studies that cite how important mind-body therapies are to MM patients and survivors.
I understand that mind-body therapies don’t get much respect when it comes to a MM diagnosis. All I am saying is that the mind-body therapies below are complementary therapies to be added into your regimen and that they are what I have been doing for years now…”